My life with Ehlers Danlos syndrome

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Pain Flare-ups

By yesterday afternoon I was in quite a lot of pain. I’m not sure what the trigger was. It wasn’t one of the usual ones, like over exertion, or injury, but the weather is kind of strange with rain and snow or sleet, and warm then cold temperatures, and one of the treatments I get is starting to wear off. I haven’t been sleeping all that well, unusual for me, another major blessing! I’m certain all play a part.

When I have a pain flare-up, the most affected is always my back. My back is in spasm, and it hurts to walk or stand for any length of time. It hurts even when lying down. My abdominal muscles are also in pain, likely from keeping them stiff, keeping my back from moving. My right hip is always worse than my left. It aches, crying for attention. My knees are fairly quiet until I move. Then they pop and snap into place, and ache for a while. When I walk they are a little wobbly. I need to go slowly to make sure they are going to take my weight before I step onto that foot. If not, I tumble. My elbows are sore, right more than left. Wrists, right more than left, fingers on my right hand… but I’m going to rest in a bit.

What also hurts is my pubic bone. This started in pregnancy with my daughter. I had a mild case of symphysis pubis, hardly measurable, but oh my goodness, is the pain real! I had to go on bed rest. My daughter is 15 in 3 weeks and I still have days where I can barely walk. I feel as I’ve been kicked by someone wearing steel-toed boots. Still. A knee pillow helps. Also helps align my back and hips for better rest.

I do not have a migraine, and my neck does not hurt, so I will count those two blessings on the score! side.

On days like this I feel very nauseated. I try to stay off of social media as much as possible because I don’t often communicate my thoughts the way I want to, and they come out jumbled. I’m very afraid of inadvertently hurting someone. I tend to cry randomly. I’m very sensitive. I try to be extra good to myself. Sometimes these days feel like they will never pass, and you start to worry that things will never get better, but they always do. Eventually.

Napping, reading, if I am able (because sometimes I have no concentration at all), trying to keep my nutrition up, pampering with face masks, and ensuring I remember my medications, as well as scouring Netflix for good documentaries are usually how I spend these days. I’m almost always low energy, or medicated to the point I’m tired. Unfortunately.

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Disclaimer

This is intended to be a blog of my experience with a medical condition. Please seek medical advice before trying any medical diet, procedure or following any advice you read here. Because our bodies vary so much, I would hate for you to get sick from something that worked well on me.